Navegación “Vivir con FSHD - Sociedad FSHD”

FSHD Society Hosts First-Ever Bilingual FSHD 360 Conference in Montreal 

Publicado el junio 29th, 20266/29/26

By Ashley Ferreira   On Saturday, May 31, the FSHD Society welcomed members of the FSHD community to Brossard, Quebec, for our Montreal FSHD 360 Conference. With 32 patients, family […]

Archivado en: Vivir con FSHD

Seguir leyendo

Volunteer Spotlight – Rick Whitehead – Knoxville, TN 

Publicado el junio 23rd, 20266/23/26

by Beth Johnston Meet Rick Whitehead from Knoxville, Tennessee!  Rick has volunteered with the FSHD Society in several different capacities, and most recently is serving as the Facilitator for our […]

Archivado en: Vivir con FSHD

Seguir leyendo

Chasing Justice and Butterflies: Ed Barocas Reflects on a Life of Purpose, Humor, and Hope

Publicado el junio 22nd, 20266/22/26

One winter morning, attorney Ed Barocas arrived at a historic courthouse in Morristown, New Jersey, only to find himself waiting outside in the cold. Because he uses a wheelchair, he […]

Archivado en: Vivir con FSHD

Seguir leyendo

Colleen’s Story: World FSHD Day Stories

Publicado el junio 18th, 20266/18/26

Looking back, the signs were there long before I had a diagnosis. As a child, I had a curved posture, winging shoulder blades, high arches, and slept with my eyes […]

Archivado en: Vivir con FSHD

Seguir leyendo

Why I joined BetterLife: A Q&A with Robert (Bob) Humphreys Jr.

Publicado el junio 18th, 20266/18/26

In honor of World FSHD Day this month, we are spotlighting our community member, Bob Humphreys, who shares with us how BetterLife has helped him on his journey. Note: Testimonials […]

Archivado en: Vivir con FSHD

Seguir leyendo